One thing that I hear from moms whose kids have disabilities is how isolated we feel. For many reasons, being social and all the things that comes with it – phone calls from friends, play dates, nights out – becomes something of a luxury.
I’ll admit that over the past year, I’ve been pretty bad about socializing. I simply haven’t had the desire or the energy for small talk or hanging out. Now that things are starting to calm down though, the urgency of beginning treatments and of digesting every miniscule piece of information relating to Anthony’s condition is past, we’re beginning to emerge and take stock of the social landscape. And what I’ve found isn’t pretty.
One of the problems is a lack of time. Motherhood is a 24/7 occupation. It might be born out of love, but it is still a hard, physically and emotionally demanding job. So when you add in the special needs of a non-typically developing child, motherhood becomes all that much harder.
By the time my husband gets home in the evenings, I am done. I am ready to completely zone out and not think about anything. After the kids are in bed, I just don’t have the energy to do anything other than exchange a few words and a kiss with my husband and walk to the bed to crash. So your jewelry party? Or makeup or plastic container or cooking implement party or girls’ night out? As much as I might want to go, it’s just not happening. Unless you’re looking for someone who will fall asleep in her margarita, then I’m your gal.
It’s hard for friends to understand that. It’s hard for them to understand that I can’t leave Anthony unattended, not even for a five-minute phone call. It’s not safe, for him or his siblings, and while he doesn’t do things maliciously, he also doesn’t realize why it’s not okay and dangerous to do certain things. When I talk on the phone, I get distracted and that isn’t something that mixes well with keeping my kids safe.
Another issue is that, with the exception of a few close friends, I’m finding it very difficult to relate to other moms whose kids are Anthony’s age. It’s hard to be an active participant in a conversation when your child isn’t hitting the same milestones as other kids. Or maybe it’s the pitying looks that other moms give you when you share a triumph or what happened in a recent therapy session, especially when it marks your child as “different” or “slow.”
There’s also a lot of head shaking accompanied by the seemingly requisite phrase, “I don’t know how you do it all.” And though I’m sure those head shakers are trying to give a compliment, I always get the feeling that what they’re really saying is, “I’m so glad it’s not me.”
The answer, of course, is that I don’t see that I have a choice. I do it because I will do anything to give my child any advantage possible. I do it because the option of not doing it and allowing my child to drift and not have the most fulfilling life possible is simply not an option. I do it because it is what any mother who has her child’s best interests at heart would do. I do it because I love him.
I guess I feel like a fish out of water. I have more on my mind than what to serve for snack at next week’s play date and the latest celebrity gossip. While other moms are trying to decide whether to hit the park or the library, I’m hoping that I will be able to get Anthony to eat that day.
The logical solution is to find other moms to whom I can relate. Moms whose children are not typically developing. But the very idea is almost laughable – because they’re dealing with their own set of unique circumstances and probably have as little time to socialize as I do.
So what do we, as moms of special needs kids, do? Let’s hear your thoughts.